Darn Good Lemonade
Making Lemonade From My Pair of Lemons, Diagnosed at 30 & Life Beyond Breast Cancer

September 2011 archive

Everyone Deserves an A+

My dad and I explored Huntsman today and found a really nice back patio that I had never seen before

I decided that I got an A+ from all of my tests today (even though it took me hours later to get them in here). Of course after all of my tests I am curious what tests are supposed to be completed normally, will I ever have an MRI again, do you do that if you don’t have breast tissue? The things you forget to ask when you are at the doctor’s office (which is why they should be written down).

Today they tested my heart to check my ejection fraction after my previous tests coming back showing that my heart had been a wee bit damaged by Adriamycin (I can’t tell you how many times I have had to spell that word before I could actually spell it correctly every time).  I wrote down the numbers this time so that I get them right. I had an ejection fraction of 73 before I had chemo (which is apparently really good) and it went down to 56 after chemo (I got it wrong in my previous post). Sounds like a lot? It is, a bit… Chemo hurt my heart. My test today showed 66, which is pretty major improvement and almost back to where I started!

The second set of tests were my blood tests which all came back as all things normal (my liver was acting up a bit in my last test before my surgery).

The third set was a bit more last minute but I have had a bit of a strange cough. Totally random, dry, haven’t a clue. The radiation oncologist felt like it could be acid reflux so I am going to start medicine for that. They also did a lung X-ray (because realistically, if some tiny twinge happens in your lungs when you are in treatment for breast cancer you worry that it spread to your lungs. Period).  It came back clean and clear. I am scheduled to check for asthma if the reflux medications don’t resolve it.

I received my Tamoxifen prescription today. I will start taking it tomorrow morning. WOW. I am on the pill portion of my treatment (5 years, but it is 5 years of pill breast cancer fighting action). Tamoxifen can decrease risk of breast cancer recurrence by 50%.

One thing about my cancer adventures is that I didn’t do chemo and radiation to treat the cancer that I had earlier this year. It was something I went through to keep myself from having a recurrence. Recurrence is strangely something I never had heard of or thought about until I had cancer. It could be a bit selfish, but I had thought that they either got the cancer or they didn’t. I didn’t know that not getting the cancer meant that it comes back elsewhere (stage 4 means it got elsewhere and created a tumor. Every stage before that is based on how far the cancer has spread, usually counting how many lymph nodes were involved). Recurrence can be local (the same cancer cells showing up in the area of the original tumor, skin, tissue etc.) or a recurrence showing up elsewhere in your body (metastatic breast cancer can mean a tumor in your bones or lungs, but it is the same type of breast cancer cells in your bones and lungs). All of the decisions I have made in my treatment have been related to reducing my risk of recurrence and keeping myself from ever getting breast cancer again.

The statistics that come at you when you are diagnosed tend to be based on your risk of recurrence or your chance of dying. Sounds gruesome, but that is really what they measure in cancer studies. They don’t measure your emotional well being or your sex life, they check up on whether or not you are still alive and whether or not your cancer showed up again somewhere in your body (note, if you have breast cancer in one breast, and you end up with breast cancer in the other breast, it is a completely different cancer, but you have a higher chance of cancer showing up in the other breast if you have had breast cancer, whoooo).

You tumor grade and size are relevant in your chance of recurrence. Your tumor “grade” is different from your stage because it is based on the mutations within the cell (the more mutations the more it likes to spread), which is related to how many times the cells split. I won’t bore your with the details, but info on breast cancer tumor grades are here a (mine was grade 3 and a 9) 9 is the highest in grade 3 so this means I get two A+’s today.

So, in short, my tests came out great today. We kicked this cancer in the butt, but I am not going to lie. I am a bit worried about the cancer coming back although I feel like I have done everything in my power to keep it from coming back. Which is why the word associated with cancer is:

El Fin

Yay! Done! This is probably not the type of certificate parents dream about their children earning.

El fin is Spanish, it translates to end; aim, goal, purpose.

I have written probably 3 or 4 blog posts this past week that I haven’t posted. Some were angry, some were scared and some were sad. This past week my sense of humor has gone out the door, I can’t wait for it to come back, it is sorely missed! I guess I have been writing a bit more for myself lately and never quite posted them. I was trying to articulate what was swimming around in my head and ended up keeping those thoughts for myself for now. I will probably use some of those posts on a later date when I feel like more things are behind me and emotions are a little less raw.

Although radiation has been much easier in several ways than chemo, it truly comes with its own sets of challenges. Honestly I am sick and tired of being sick and tired.

The shiny stuff is the aquaphor. The armpit is healed, the rest isn't.

Today was the end of radiation treatment for me. What I expected to be an exciting and happy moment died quickly as I burst into huge crocodile tears. For some reason pain and exhaustion leaves me with a complete lack of emotional control. The radiation techs wanted to know what was wrong, I admitted that I had had a pretty rough weekend and had hoped I was over the hump and ready to be done. The tech looked at me and told me that it would get a bit worse before it got better (always love to hear that, but I really prefer things to not be sugarcoated). She told me that most of the patients she has spoken with say about 3 weeks after radiation they start to feel a bit more like their old selves.

I met with the doctor (mine was out, so I met with another radiation oncologist due to my little emotional episode). Today I graduated from getting one tiny sheet of Mepilex at a time, to an entire box of Mepilex of my very own. That stuff really is amazing. I have it plastered all over my body. This stuff is $80-$90 a sheet though, yikes.

I am also sad to say, I did not get any of the intended radiation causing superpowers. It wasn’t for lack of trying. I certainly thought the least I could come out with was maybe a little invisibility here or there… but what can I say?

Friday night I started to get deep throbbing pains inside my shoulder and lower neck area. The tendons, muscles, lymph nodes and who knows what else started to really act up. It hurts to hold my head up by the end of the day, everything in there is sore. This is paired with sharp stabbing pains from somewhere between my breast expander and my ribs. Saturday morning I could hardly get out of bed I was so sore. My skin had healed right in my armpit where it was red early on, but the rest of my left side peeled off. You don’t really know where and when it is going to happen – no blisters or sores, the skin just peels off. This is spreading across the entire breast. Where I do appear to have something “blister like” is along my scar area that they did a booster treatment this past week – I can feel it a little bit, but that is where I am fairly numb from surgery. They used a bolus on the scar every day (not the sparkly one, this time I got the rubbery boring one). Considering my doctor hit the majority of my skin about half as hard as she initially planned, I can’t imagine where I would be if things had stayed as planned.

We also recently discovered that pain medication that I had left over from surgery had been stolen. I was saving them for my next surgery or if radiation graduated into the painful zone (which it has graduated into that now, but the pain is very controllable with medication, not that I like being medicated, but I am tired of being in pain – it is that ever interesting debate I have with myself). I didn’t just have them sitting in my medicine cabinet, they were hidden in my closet where few people go. Mike told me to hide them better many times, but I figured they were fine. We had some people treating the house for a sugar ant invasion that could be featured in horror movies (I should have taken pictures, there were on the ceiling, it was crazy!). We think one of the employees of that company took them as they were in the nooks and crannies of our house spraying for bugs. We felt very violated that someone stole something like that right out of our house. I don’t think they knew why I had them, but seriously, who steals pain meds from a cancer patient?

Next week I meet with my oncologist to start Tamoxifen and to check my heart to see if it has improved from the last time they checked it before my surgery. Having radiation on your left side is also a bit riskier for additional heart damage. My fingers are crossed that we see improvement! Today I rest, this weekend, I celebrate!

PS. Mom, don’t freak out I will be fine. <3 you.

Life is Too Short

Photo belongs to Secrets Silversands Riviera Cancun.

Mike and I were planning on a huge trip to Europe next year. After Mike had been at his new job for over a year and I would have lots of vacation time saved up after all of my surgeries and sick days I have had this year. The more I thought about it, the less I could convince myself that we should wait to go somewhere. Although I will owe work a lifetime worth of vacation and sick time after my surgery (which I actually accrue fairly quickly, when you have been at a job for over 5 years the vacation benefits really do stand out). The biggest issue was if Mike could get time off of work. He spoke with his boss and was able to get time off so I have been nonstop “vacation vacation vacation” yapping for the last few days, I think I may be driving Mike crazy.

We are going to wait and go in November so I have had time to recover from radiation and have at least a month to recover from vacation before my surgery. I am not going to list specific vacation dates as announcing when you are out of town on the innerwebs is usually not a good idea, but if you figure it out my house will be house sat and the sitter will be armed and super scary (so be scared! HA!).

The problem was where to go? Not enough time to go to Europe and I am not up for a red eye flight anywhere (I can’t sleep on planes). A lot of people choose to go to Hawaii after cancer treatment, but Hawaii just wasn’t super appealing to me. We were going to go on a cruise, but the more I looked into it, our timing would probably put us on a very crowded ship and I wanted to spend more time relaxing than waiting in long lines (although we will still go on a cruise someday, more preferably when it is a bit more off season).

I have spent the whole weekend trying to decide. I have never been to Mexico so I ended up choosing Mexico after all of the research, I was stick a bit on “all-inclusive” after the cruise research. I chose a resort where the people shared pictures of the food just as much as pictures of the beach (thank you fellow travelors!). Mike and I tend to spend a pretty dime on food when we travel, so not having to think or worry about finding great food is pretty cool. I also chose an adults only resort (so that I am the only one peeing in the pool, because adults don’t do that right?).

I still wish money grew on trees, but we have been able to save some money over the past few months (after I depleted our vacation fund to finish the second bathroom as I anticipated needing my own bathroom space with chemo and surgeries in front of me before and after photos here). The problem with booking a vacation is that you figure you deserve “just a little bit more” and I kept upgrading and downgrading and upgrading – I signed up for the normal room (which is still a jacuzzi suite, muahahahahaha), but entered a contest for the upgrade *fingers crossed*. Oh well, money in a savings account or memories forever, today I choose memories. Mike and I need to get out of our normal cancer treatment routine and have a real vacation (after our pretend vacation left me in a full body rash – yes, my life is what slapstick comedies are made of).

So, as I go through my final week of radiation, all I will be thinking about is white sandy beaches and getting myself bikini ready (I just bought a new one that should hopefully cover up my scars, I can’t really try it on until the radiation redness calms down). I have temporarily stopped working out again. Getting my butt to the hospital before 7:30 AM every day sort of zaps my energy by the time I get home from work, but now I am enthused to get my butt back on that elliptical. Either way, OMG I am going on vacation!!!

Skin is Overrated but Magical Foam is Not

Stare into my armpit of DOOM!

Or so I keep telling myself. I sort of lost half of the skin in half of my armpit over the weekend. No pre-blister slowly going away, just BAM! Gone. I think it may have been because a shirt was rubbing me? I am just not quite certain how it went away, other than the fact that it did. Luckily my first day back at the hospital with the sore armpit was the day that I got to see my Radiation Oncologist. She cancelled all use of my fancy sparkly top for this part of the radiation (of course she saw me after I had already been radiated with it that day).

The doctor told me that everything will continue to do its thing for 7-10 days after they stop radiating, so she was basically letting me know that I will probably lose more skin. It feels like a blistered sunburn, not a pleasant thing, but they gave me a Mepilex dressing which is a thin sheet of foam cut to cover the area in my armpit that is sore, and it works like a champ. It doesn’t have any medication, but somehow the dressing itself really cuts down on the pain.

I have 3 more runs of the entire breast/armpit/collarbone neck area. Next Tuesday I will switch to what they call the “booster” for my last five zaps. This is where they will focus on my mastectomy scar only. I am hoping this means that the rest will finish doing the post-radiation radiating so that when I am done with all 6 weeks I won’t have too much continued deterioration of my skin.

I have had bouts of being tired throughout the radiation treatment, but this past week the tired seems to be accompanied with nausea and dizziness (which is completely not normal, so anyone undergoing radiation, this isn’t an expected side effect). I am not sure if it is being so tired that does it, or from being sore. I keep thinking I have the flu (maybe I do?), but this has been going on for over a week, so I am just not sure. It forces me to go back to taking it a bit more easy, which sucks because I was starting to feel more recovered and back to normal for awhile there, but I am getting so much closer to done it just isn’t worth fighting not feeling well for the end of this.

I keep telling myself that I only have to do this a little bit longer. I am getting close to being done with actual cancer treatment (unless you count the daily Tamoxifen for 5 years, but that is a pill rather than a hospital visit).

8 MORE treatments! I will then get a nice break until surgery on December 27.

 

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